Ethical, Legal and Social Implications (ELSI) assessment of data sharing

Summary

ELSI assessment of data sharing will be conducted focusing on three levels:
(1) individual (patient) level, specifically on the use of next-generation sequencing (NGS), which presents challenges for securing truly informed consent and honouring patient preferences for the many different types of genetic information potentially yielded by NGS); (2) institutional level represented by various stakeholders (e.g. professional organisations in genetics and oncology, test laboratories, clinical trials networks) with vested interests in deciding which types of sequencing results to analyse and return to patients or research participants, and how to manage clinical implications; and (3) societal level, e.g. questions of resource allocation and priority setting. This task will be led by DYPEDE, Greece.

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Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor HADEA can be held responsible for them.

This project has received funding from the European Union’s EU4HEALTH Programme under the Grant Agreement no 101162959